Imagine, if you will, a large, round lampshade with tons of tiny holes in it. Now imagine that there’s a picture in each one of those holes, with a light behind it that projects the image onto a screen, like the little microfiche films you used to look at in public libraries for junior high research papers. With me? Now put the lampshade on your head, and let each one of your thoughts shine out a little hole, so that together, the snapshots narrate all the different things happening in your brain.

The thing on your head is called a thoughtsorter. (I invented it myself.) I use mine when my (good) multitasking skills can’t quite keep up with what I intend to do in a day, or with the things I want to think about. It’s not so fashion-forward, but it’s quite helpful as an organizational tool.

I haven’t needed my thoughtsorter in about three weeks. (Have you noticed? I’ve been gone about that long.) See, I’m working on two Big Projects—things I hope to tell you more about very soon—and it’s pretty much been me, my kitchen, a lot of dishes, and an increasingly dirty computer. I’ve had my proverbial head in the sand, which eliminates the need for said hat. It feels really good not to need all the little holes.

Today, I’ve come up for air, and I’m thinking about my hands. They’ve been white all day. They get this way sometimes (medically, it’s called Raynaud’s Syndrome, and for me it’s part of having lupus), mostly in the fall, when the weather turns. My body’s watching the calendar, it seems, and this year, Seattle’s snapping into late September with alarming punctuality. When they turn white, my fingers remind me of those strange whitish carrots, all wrinkly and not quite as pretty as they might otherwise look.

No one has ever been able to tell me why I have lupus, or how long I’ve actually been affected by it, but it’s clear to me that the side effects became serious when I lived in La Jolla, California, during the fall of 2003. I suppose we all want something to blame for the less desirable things in our lives, and for lupus, part of me always accused this unrealistically sunny, plastic-peopled paradise of making me “sick.” Shortly after I moved away and was diagnosed, La Jolla became the source of all evil.

About a month into our time there, I started noticing funny things. First my back ached, my fingers blanched every time I walked into air-conditioning, and my feet and hands hurt. I attributed it to spending hours cooking every day, and plenty of time grocery shopping, in addition to my normal active lifestyle. Then it was hard to tie my shoes, and hard to open doors. I remember sitting in a Whole Foods parking lot in my rented Ford Focus, deciding whether the fact that I physically couldn’t get the trunk open without using both hands was a good reason to cry.

One day, I went to pick up my coffee cup, and my hand sort of crumpled sideways, like it had lost all the bones. I went to the ER the next day.

The rest, as they say, is history. I have lupus. It’s relatively well managed, if you don’t count random bouts with possible kidney failure. (My kidneys are much happier now, thank you.)

But for whatever reason, I could never really put that time in La Jolla behind me. I was literally afraid of the place. I have a hard time pinpointing exactly what I was afraid of—that things would get worse if I stuck a pinkie toe into southern California? Hardly realistic. That all the emotions and fears surrounding finding oneself being consumed by an autoimmune disease would come flooding out uncontrollably? Maybe that. No one likes public displays of hysteria.

I’ve always known I’d have to go back. You know, back to the wolf’s den.

I planned a trip for last May, just after two of my closest friends moved to the area. Three days before departing, I was told I needed a quick round of heavy IV drugs for that kidney thing, and that I wouldn’t be leaving Seattle. Figures, I thought. I rescheduled my trip for Labor Day. But this time, instead of going with my family, I’d go alone.

Looking back, I think I did expect something of a turbulent, rollercoastery reentry, but it was nothing of the sort. I went down to La Jolla Shores with my friend Michaela, who’d arranged for us to go snorkeling with leopard sharks for my birthday. (Nothing eases the nerves like swimming with sharks, right? “Really, they’re harmless bottom-feeders,” she’d said. She was right.)

So much came back. I remembered driving the Focus, and the weirdness that is SoCal. I retraced my driving route to and from the Scripps research pier. I visited the little sandwich shop I’d loved. (I’d forgotten how ludicrously large they make their sandwiches.) I remembered the women, those falsely curvy, Juicy-clad glitterati that prowl downtown La Jolla, trying to look important, but (I always thought) actually just looking like they need something better to do.

We shopped. We people-watched. We ate cupcakes.

But at no point was I overwhelmed, or even touched, by emotion. It sort of surprised me, to be honest. I thought I’d be a wreck. My time there changed my life, and not necessarily for the better.

I flew back to Seattle that night feeling stunned. For years, I’d put off going back to La Jolla the way people avoid exes, for no reason. There was just no part of me that needed to do any forgiving (or forgetting, for that matter). Quelle bonne surprise.

It did make me wonder, though, how I was able to separate La Jolla from all that happened when I was there, and whether other people in similar situations can do the same thing. Maybe—just maybe—that’s when I invented the thoughtsorter. Maybe I was somehow able to separate all the little things that bothered me about being diagnosed from all the fun stuff in my life, so that my friendships, my relationships, and some of my everyday habits could avoid the inevitable cloud that medical issues can often cast over one’s life. It’s just a theory, but if it’s true, I’d bet there’s a good market for thoughtsorters in the medical devices industry. (Hey, you research types—give me a call, and I’ll send you the specs, for a small fee.)

I don’t actually expect researchers—even the best ones—to find a cure for lupus anytime soon. But finding anything new, even the slightest improvement on previous knowledge, might give hope to someone just being diagnosed, and to me, hope is the goal. I function just fine with lupus because I know, in my heart, that there will be ups and downs, but that overall things will be just fine. One of my lights has always been hope. It kills me to think of people going through those first uncertain stages of diagnosis without it – not knowing whether they’ll ever feel normal again, or go for a run again, or have children, or whether they’ll be okay if in fact it turns out that they can’t do any of those things.

That’s why about month from now, I’m participating in a lupus research fundraiser, called the Mad Hatter Walk and Roll. It’s one of those little walk-a-thon things. (Believe it or not, I’m planning to run it, with the highfalutin’ goal of finishing before the walkers.) Everyone wears funny hats, and eats lots of doughnuts, and for one day, everyone who has lupus struts around feeling like their medical status makes them a bit of a rock star. I can’t wait.

And you know what? I think I have just the hat.

(If you’re in Seattle, come join me! Or donate to my team, lupus minimus, if you’re so inspired. The info is here.)

Hot Honeyed Carrots

Made with fresh garden carrots, this is more of a concept than an actual recipe. Top and scrub the carrots and place them in a pan large enough to hold them in one layer. Add water to cover, along with a good pinch of red pepper flakes, and bring to a simmer. Cook, stirring occasionally, until all the water has evaporated, partially covering the pan once the water reaches only halfway up the sides of the carrots. When the water is gone, drizzle with honey, sesame oil, and soy sauce, and cook and stir until the sauce has reduced to a glaze, just a minute or two. Serve immediately.

7 responses to “The Thoughtsorter”

Hi Jess,
I applaud your run/walk for lupus. I know how much energy you will expend, energy you probably don’t have, but it’s for a great cause. I have sjogren’s, an autoimmune disease in the same family as lupus and rheumatoid arthritis, and I don’t have to tell you the days I go through, I’m sure you know what they’re like. I’m glad you were able to make your trip and that it went well. Keep well.

My La Jolla is Pulaski County, Missouri. Home of Fort Lost in the Woods, Misery. Evil place, full of lost and wandering spirits. The Army bought it during the WWII build-up because it was the absolutely cheapest land in the country. The native Americans had fled the area a hundred years earlier, blaming it on outbreaks of every disease you can imagine.

Pulaski County nearly killed me.

Shame, because Kazimierz Pułaski was a real patriot. But he has other things named after him, so he’s cool with one mistake.

Wow. That was really moving. Thank you, Jess. (Wish we’d gotten to talk about this stuff when you and G. came over!) I can so relate — I avoid the long staircase at the Montlake bus stop here in Seattle because that’s where I first knew something was really wrong, when I was making my morning commute and suddenly my legs w0uld not move to get me down the stairs. I stood there, stunned, watching my frozen ankles for ten minutes, willing them to move, before calling a cab. Ever since then, I’ve been afraid of that staircase, like the staircase made me sick. i always point it out when we drive by. I’m happy for you that you’ve reached this new step in relationship to your lupus — and proud of the many steps you will take in your fundraiser!

Thanks, Jess. I loved your blog before I had lupus but now, newly diagnosed and in denial, I love it even more. Couldn’t these aches be from getting older and carrying around a 25lb baby? I’ve always had kidney issues, why is this different? The uncertainty of what it all means is definitely a killer but knowing there are others out there in the same boat and have hope helps.